a bit of normalcy

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There was conversation. There was camaraderie and a sense of connection. A piece of my day, with no illness to navigate, or arrange, or schedule around.

Just me.

A meal served as voices were ebbing and flowing like the musical notes floating through the air.

Beautiful glasses of wine, handshakes and hugs.

The banging of kitchen equipment, and a chef making his rounds, as servers carried trays of delicious food, hustling to deliver plates of deliciousness.

And I sat there, absorbing it all.

I had entered through the back door. There were two small steps before I gracefully pulled the door towards me and glided in. This time, there was no scurrying in the rain to the front entrance for handicapped accessibility.

I chose a seat close to the fireplace. In the middle of a long table in fact, with chairs crammed in as close together as possible.

I didn’t have to try to rearrange the seating for a wheelchair to fit. I simply made my way, and sat where I wanted.

How simple…and how easily I forget.

These moments are few, but so very precious.

A chance to reconnect with others, without the sideways glances.  A conversation with interruptions of jokes or inquiries of the Thanksgiving gatherings, and laughter.

A napkin in my lap, that wipes only my lips.  A glass with no need for a straw.

A quick jaunt to the bathroom, with no worry of space, or who may be in the men’s room. Is there anyone who can be on the lookout? Instead, I push the door that says, “Women” and it is a non-event.

No thoughts of illness…ALS…or caring for someone…

My brain slows. My shoulders are relaxed, and I feel my cheeks smiling, not forced, but a smile born of gratitude for this moment. I feel…..

Normal?

How silly of me…how selfish to want more of those moments.

Hugs goodbye, I walk back out into the rain.

I take my time. Twinkling lights are everywhere, as I feel drops of moisture on my upturned nose.

Being present, and appreciative for all that I have.

Sad the evening is over, but grateful for the home I get to go to.

Who needs normal anyway!?

 

he said, she said…

He said, “Wow! It’s nice to meet you!”

She said, “hello….”

He said, “We have a mutual friend.”

She said, “She invited me to come listen to the music with her.”

He said, “I am glad you could make it”

She said, “Thank you. I don’t get out often.”

He said, “Can I buy you a drink?”

She said, “no thank you”

He said, “Its been months, how are you?”

She said, “The summer went by too fast”

He said, “Can I buy you a drink this time?”

She said, “Sure, I would love a water!”

He said, “It’s loud in here”.

She said, “WHAT?”

He said, “Do you like live music?”

She said, “Yes, It’s my favorite!”

He said, “You came with her again?”

She said, “I’m her designated driver.”

He said, “Here is your water.”

She said, “Would you dance with me?”

He said, “yes”

She said, “You can DANCE!”

He said, “Wow, so can you!”

He said, “Will I see you again?”

She said, “Maybe…”

He said, “I haven’t seen you in weeks, where have you been?”

She said, “My life is complicated….

He said, “What do you do?”

She said, “I go to school”

He said, “would you like to go dancing?”

She said, “ok”

He said, “Are you seeing anyone?”

She said, “No…and I want to keep it that way!”

He said, “Why?”

She said, “I am recently separated.”

He said, “I was married for a long time too”

She said, “I have children”

He said, “I bet they are great!”

She said, “You aren’t my type”

He said, “I know, but can we keep dancing?”

She said, “Yes, I would like that…”

He said, “We have been dancing every month for almost a year now!”

She said, “I just want to be friends…”

He said, “I know…”

She said, “I’m not ready for a relationship.”

He said, “I understand. I am happy just being your friend.”

She said, “Thank you for being such a great friend to me”

He said, “Who are you here with?

She said, “I am here on a date tonight”

He said, “Do you like him?

She said, “I don’t know yet”

He said, “That guy shouldn’t be flirting with your friends”

She said, “I guess he wasn’t that into me”

He said, “He’s an idiot”

She said, “Thank you”

He said, “You deserve better!”

She said, “I agree..”

He said, “I like spending time with you”

She said, “I need to take things really slow”

He said, “Of course”

She said, “I think you are looking for more than I am ready to give.”

He said, “I have all the time in the world.”

She said, “What’s wrong with your fingers?”

He said, “Nothing, I am sure it’s nothing”

She said, “I am not ready”

He said, “I’ll wait.”

She said, “Please go to the doctor.”

He said, “Go to Cabo with me!”

She said, “I am a single mother, I can’t go to Mexico!”

He said, “It would mean so much to me!”

She said, “Will you go to the doctor?”

He said, “Of course, as soon as we get back!”

She said, “Its beautiful here!”

He said, “Thank you for coming with me.”

She said, “What did the doctor say?”

He said, “He wants to run some tests…”

She said, “It is going to be alright…”

 

He said, “I have ALS”

She said, “I know”

He said, “I’m scared.”

She said, “Me too”

He said, “Maybe you should leave?”

She said, “I promise I will stay”

He said, “Will you spend the rest of my life with me?”

She said, “Yes”

He said, “My legs are getting weaker…”

She said, “We need to find a new home”

He said, “I want to marry you and dance with you on our wedding day.”

She said, “There isn’t much time.”

He said, “I am sorry we are rushing things.”

She said, “I am sorry that the last time we danced was on our wedding day…”

He said, “I don’t want to use the wheelchair.”

She said, “It’s there when you are ready…”

He said, “I can’t lift my arms anymore.”

She said, “It’s okay, I am right here…”

He said, “Don’t worry, we are going to be alright…”

She said, “I don’t know how to ask for help”

He said, “Neither do I”

She said, “I don’t know if I can do this alone.”

He said, “I feel like a burden.”

She said, “You are not a burden.”

He said, “Happy Anniversary!”

She said, “It’s been 3 years?”

He said, “Its going by too fast”

She said, “I feel so alone”

He said, “So do I…“

She said, “I never get to go out or do anything anymore”

He said, “Neither do I”

She said, “I didn’t think it would be this hard”

He said, “Neither did I”

She said, “I miss being held.”

He said, “I miss touching you.”

She said, “Where did everybody go?

He said, “I don’t think they can handle this.”

She said, “I am so angry.”

He said, “I know.”

She said, “I had different expectations.”

He said, “I think it’s just you and I.”

She said, “You are my person.”

He said, “Thank God I have you.”

She said, “We still have so much to be thankful for…”

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The ending of a song…

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The music makes my body sway. The upturned faces, smiling, as they nod their head to the beat. Music fills the room, and the old, young and everyone in-between, are caught up in the moment, and their energy. Parents have their phones out, trying to video tape and take pictures in a darkly lit room. Grandparents are singing along, not bothering with capturing the moment on film, they are content to watch. Matthew and I had snuck in, half way through the show, standing along the edge of the auditorium, as there are no seats for those who have arrived late.
Finally, her choir comes on stage…
She is in the very back. ..the back of the stage where I can’t see but the tip of her head. The songs are sung back to back, with little to no break in-between. The singers are smiling, all wearing ridiculous renditions of what they think the 1970’s and 80’s styles were. I suppose a few of them aren’t too far off. Their dance moves are more for themselves than to show their skills, but they have pure joy on their faces.
I feel it.
I see it.
It engulfs me.
The audience has come to watch these children perform one last time.
I begin searching, reaching back into my memory. Was I every so carefree at that age? I can’t remember ever feeling like that, feeling so much joy? I must have, but it seems so foreign to me. I can’t remember my high school years being very happy ones. If anything, I was in such a hurry to get it over with. I often felt alone, as if I didn’t fit in. I suppose I often feel like that still.
Suddenly, I see my daughter’s face. It is lit up, blissfully radiant, as she has completely let herself fall into the rhythm and song.
When was the last time I saw her like that?
I am struck with fear and regret and shame and guilt. Every emotion comes rolling into me. She will be a senior in high school next year! But when I look at her, all I see is that sweet, innocent baby toddling down the pathway, her little pigtails, and her excitement at every new experience before her.
I can’t remember if I was ever so happy when I was her age, but I want to hold this moment for her. I want to tell her to lock it deep inside of her. To pull from it when she has lost her way. I want to hug her, and tell her that I will always love her, that I am so proud of the woman she is becoming.
I need time to slow down.
It’s going too fast! Please… I haven’t had enough time with her!
I haven’t gotten to enjoy who she is today yet!
I need to tell her how much she means to me, how much her laughter makes my heart burst with happiness and pride. I need her to know that I am harder on her, not just because she is the oldest, but because she has such naïve innocence, and such a trusting and open heart, that I am afraid that if she doesn’t learn fast enough, the world will swallow her up…and I am scared she will make choices out of fear, instead of searching for choices that suit exactly who she is, and who she will become. I simply want her prepared… because those were the choices I made. I was scared…and I was alone…and I didn’t know how wonderful the world could be…
I want her to know that I am here for her…even when she doesn’t do “life” the way I want her to. I want her to hold on to this moment..this exact feeling of freedom, and take it with her, to let it guide her on her way.

So many children, almost grown, all in the spot light, with their fresh faces and youthful innocence. I can see pieces of who they are, and who they are going to be. Some are so confident, yet others have no idea yet the strength they possess. The coming weeks, many of them will walk on stage again, this time to be handed a piece of paper that signifies the end of their childhood. They are rushing towards an unknown, and doing it with such excitement, I don’t have the heart to burst their bubble.
Each of them will fail.
They will fall again and again, and it will hurt. Most of them will stand back up, wipe the dirt off themselves, and take another step forward. The world is wide open for them, and their paths are unknown. I am excited for them… and I am scared for them. Mostly, I am scared, because this is the first time I have felt the intense sadness that this time next year, my daughter will be walking towards her own unknown.
I don’t understand. I am standing there, and I can remember being that exact age. Did I look like that? Did I have confidence, or was I simply placing a smile one my face, trying not to fall to pieces, as the world was suddenly larger than I thought, and there was no one I could fall back on when I failed.
Does my daughter smile, hiding her fears, trying to be brave…for me? Or for the world around her? Or both?
She gets that from me….because I am smiling as I sway along to the music. The song is almost over, as they begin slowly moving and bending, arms outreached, as they softly lower their voices and slow their tempo down. The song, “Stairway to Heaven” is almost over…and with it, the ending of a part of their childhood.